Sorry, you need to enable JavaScript to visit this website.

Sign Up For Mailing List Button

Donate to Genetic Alliance

Disease Search Button

Chapter XXVI - Health Insurance Portability and Accountability Act in Research

Facebook icon
Google+ icon
Twitter icon
LinkedIn icon icon
Digg icon

The U.S. Congress passed the Health Insurance Portability and Accountability Act (HIPAA) in 1996 to protect health insurance coverage as a worker changes employment; to reduce fraud; and to establish national standards for electronic healthcare transactions. Also reflected in HIPAA is a concern for the privacy of a person and the confidentiality of his/her health information.

Each use or disclosure of PHI from a database or repository for research purposes is considered a separate research activity and also requires written authorization or an IRBapproved waiver.

Research-related treatment cannot be conditioned on participation in future unspecified research, such as the collection and storage of data/samples for future unspecified research, (45 CFR 164.508).

Requesting authorization from a research participant for the use or disclosure of his/her data/specimens for current or future specified research is permitted if that future research is required to meet the objectives of the protocol under review and is described in the protocol.

Twitter icon
Facebook icon
LinkedIn icon
Google+ icon
YouTube icon
RSS icon

4301 Connecticut Ave NW, Suite 404, Washington DC 20008-2369 | Tel: 202.966.5557 | Fax: 202.966.8553 | EIN 52-1571905

Except where otherwise noted, content on this site is licensed under a Creative Commons Attribution 3.0 License.